Video Library

How do you make peace with an unexpected, and often unwelcome, diagnosis like vasculitis? In this webinar from our new “Living with Vasculitis” series, Stacey Ivits, who was diagnosed with vasculitis at 17 and is now a therapist, shares her journey with radical acceptance - how she practices not fighting the reality of her disease but learning to respond to it so she doesn’t stay trapped in a cycle of suffering. She explores physical changes and body acceptance, letting go of perfection, and more.

22 6

Speakers: Katrina Bargender, Jenna Lea Yanique Renwick, Kyle Ross
Host: Ben Wilson

What’s it like for young adults living with vasculitis? This panel discussion with four young adults living with vasculitis, explores their personal experiences and advice on navigating friendships, dating, school, jobs, body image, and more.

23 9

0 0

A panel of people living with vasculitis share their experiences with how their sense of self shifted after their vasculitis diagnosis. While the path their life has taken is very different from what they imagined, they offer insight into how they have found new meaning and strength since their diagnosis.
Panelists: Brandon Hudgins, Art Diaz, Kathy Olevsky, Heather Moya, Stacey Ivitis, Jennifer Gordon

35 1

Note and Letter Writing as a Healing Tool of Connection: Take Control of Your Own Mindset by Taking Action
When we’re faced with personal health challenges, it can be easy to turn inward, but this too often leads to depression and isolation. In this workshop, we talk about heart-spoken notes and letters (handwritten, typed, or dictated) as effective and impactful tools for reaching outside ourselves and touching the lives of others – friends, family, or strangers! Our workshop facilitator, Elizabeth H. Cottrell, is the author of the award-winning book HEARTSPOKEN: How to Write Notes that Connect,Comfort, Encourage, and Inspire. She will get you thinking about how to harness this simple, affordable tool – what supplies you need, how to set yourself up for success, and she’ll give you a formula for always finding the right words for the right situation in your own “voice.”

7 2

Living with a complex medical diagnosis can bring on stress in mind, body, and spirit. Join Molly in a session designed to support feeling better in the bodies we have right now! Participate in SomaYoga Therapy practices and take-home tangible tools you can use on a daily basis.
· Learn a series of simple seated chair-based yoga practices to soften the main stress reflexes/responses.
· Learn an easy stress and anxiety reset with practices from Polyvagal Theory.
· Tap into the tools of proprioception, exteroception, and interoception to strengthen a positive relationship with your body.
· Use gentle breath awareness practices and guided relaxation to build ease and resilience.

No yoga experience required. Make sure to have a steady chair and any support for comfort. Optionally have a place to lay down for relaxation at the end of practice. This class is a combination of education and chair-based practices that will build awareness, better function and more ease in the body and mind.

About Molly:
Molly McManus C-IAYT, E-RYT 500, somatic educator, ayurvedic health counselor, and ayurvedic chef offers private sessions, small group classes training and CE opportunities. Molly co-owns Yoga North International SomaYoga Institute, is co-founder of the methodology SomaYoga and Board President for the International Association of Yoga Therapists. Molly is inspired by the efficacy of Yoga Therapy to resolve human suffering and the ways it uncovers and supports our innate ability to thrive. As a person who manages the complex health diagnosis of EGPA herself, she shares from a platform of self-compassion and kindness and sees Yoga Therapy as the path to whole-being well-being.

4 0

Let’s dance! Join Lisa Pritzl, the founder of Empowerment Dance, for a gentle, joyful dance class that’s adaptable to any range of motion, no matter your mobility. This is a chance to get creative, strengthen your connection to your body, tap into the rhythm of the music, and just have fun.


No dance experience required. You can dance while seated in a chair or standing. Make sure to have a steady chair, water to drink, and a small space clear of obstacles.



Find more recorded classes, join a live class, and learn more about Lisa and Empowerment Dance at https://empowermentdance.com/about/

4 0

Understanding inflammation. 4:27
Causes of inflammation. 6:00
What is an anti-inflammatory diet? 8:04
Foods to eat on an anti-inflammatory diet. 10:46
Foods to avoid on an anti-inflammatory diet. 24:40
An anti-inflammatory lifestyle. 28:24
Q & A

Lucy De Matos, a Registered Holistic Nutritionist who has been living and thriving with vasculitis for 28 years, shares what foods to eat and which foods to avoid to help you live your healthiest life with vasculitis. Lucy has personal experience with this: she will share how changing her diet and lifestyle, in combination with medication, has helped her on her own vasculitis journey.
Presentation Slides https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/VASCULITIS-AND-THE-ANTI-INFLAMMATORY-DIET-2.pdf

Butternut Squash and Pumpkin Soup recipe https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/Butternut-Squash-and-Pumpkin-Soup-Small.pdf

Piña Colada and Green Smoothie recipe https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/Pina-Colada-Green-Smoothie.pdf

Hemp Seed Energy balls recipe https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/HEMP-SEED-ENERGY-BALLS.pdf

Gluten Free Chocolate Chip Cookie recipe https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/Chocolate-Chip-Cookies-gluten-free.pdf

Turmeric Latte recipe https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/Turmeric-Latte-Revised.pdf

Lemon Water https://www.vasculitisfoundation.org/wp-content/uploads/2023/11/Lemon-Water-Recipe.pdf

Recorded: November 27, 2023

127 24

Hope and healing. 7:40
Several domains of integrative health rheumatology practice. 10:07
The Mediterranean Diet. 11:00
Anti-inflammatory food pyramid. 13:49
The stress response and rheumatic disease. 16:11
Stress---what it does to the body. 20:37
Stress and the heart. 30:27
Stress response and the immune system. 31:54
Stress response and the sickness syndrome. 33:17
The relaxation response. 35:02
The 4-7-8 breath relaxation exercise. 38:33
The UCLA Mindful Awareness Research Center. 40:41
Qi Gong. 41:35
Our biological stress response systems. 42:18
The power of compassion! 43:28
Q&A: Where can I find these resources in one place? And how do I find one that fits me and my lifestyle? 46:58
Q&A: Can the stress also be coming from the medications I’m taking for vasculitis? 52:59
Q&A: Why is self-compassion so important to wellness? 54:55

Integrative Health: Strategies to calm the body's stress response.
Recorded December 2023

How does stress complicate and impact patients living with rheumatic diseases such as vasculitis?More importantly, what are specific complementary strategies to help offset the stress response on our bodies? In this webinar, Mihaela Taylor, MD, a rheumatologist at UCLA Medical Center who was recognized as one of the top doctors by Los Angeles Magazine, and Tanaz Kermani, MD, a Mayo Clinic-trained physician specializing in vasculitis provide practical, powerful techniques to empower patients.

9 0

Are you considering applying for Social Security Disability Benefits? In this live webinar, VF Patient Support Coordinator and former Disability Examiner Jodi Hall explains the disability application and determination process and provides examples on how to best advocate for yourself during it.
Disclaimers: There are many things examiners consider when adjudicating a case including financial information. Following the suggestions in this presentation does not guarantee your approval for SSDI or SSI.

13 9

Creating Your New Normal

Recorded July 2023

Sarah Jones delivers a powerfully inspiring keynote address to open the 2023 Vasculitis Symposium. Sarah Jones, MPA, MS Strategic Design, Parkinson & Movement Disorder Alliance.

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

8 2

0:00
1:26 After a diagnosis: Fear of illness returning or getting worse.
4:55 Uncertainty with mental health in systemic autoimmune rheumatic diseases.
6:47 Fear of cancer returning: A model examination of physical symptoms and emotional distress.
9:51 Use of mind-body practices among cancer survivors.
14:00 Stress management and resiliency training.
18:22 Grand Rounds: “Taming the fear of recurrence monster” in cancer.
21:39 Managing fear and worry in illness.
22:18 Brief techniques to induce the relaxation response.
23:30 Setting aside a “worry time”.
26:01 Idealized self-imagery.
28:15 Cognitive Behavioral Therapy for insomnia.
30:45 Skill 1: Stimulus Control.
31:42 Skill 2: Sleep restriction.
32:52 Skill 3: Sleep hygiene.
33:43: Skill 4: Relaxation training.
35:17 Can a lack of sleep increase pain?
36:49 Is it possible to participate in your SMART Program virtually?

Approaches to Managing Sleep, Pain, Fatigue and Uncertainty in Vasculitis
Recorded July 2023

After the diagnosis of a chronic or life-threatening illness, it’s quite common for there to be stress. Patients often don’t have a clear explanation for what’s going on in their bodies, there’s a lack of information, and a complex medical system to navigate, which can cause a lot of uncertainty. Dr. Hall looks at the types of uncertainties experienced by rheumatological patients, their association with anxiety, depression, and sickness impact, and how to address these feelings.
Daniel Hall, PhD, Staff Psychologist
Massachusetts General Hospital

View the slide presentation: http://tinyurl.com/2xhkkx4v

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

9 0

0:00
2:15 Integrative and functional approach to pain.
3:15 Six pillars of lifestyle medicine.
7:06 Understanding the “blue zones”.
9:07 Caloric restriction / dietary fasting.
11:37 What is the optimal diet?
15:49 Exercise: What does the literature suggest?
20:18 The importance of sleep.
22:45 Sleep and immunity.
27:57 Two brain networks to help us understand mindfulness.
29:10 The Default Network, and the Task Positive Network.
31:55 Grounding techniques.
35:02 What are some apps and resources to tap into these programs?
36:04 What about the effects of steroids that make sleep so difficult?
37:24 How important is it to track our oxygen levels especially when exercising?
39:55 Any recommendations on what kind of vitamins to take? And, what about vitamins that boost immunity—should they be avoided?
42:09 Any advice on taking melatonin to help our sleep?

The Art and Science of Living
Recorded July 2023

Dr. Agarwal looks at the integrative and functional approach to pain, focusing on lifestyle. By making positive lifestyle changes, we can reduce the risk of developing chronic diseases, and can potentially treat and reverse these conditions. Deepti Agarwal, MD, is Director of Interventional and Integrative Pain Management at Case Integrative Health.

View presentation slides: http://tinyurl.com/3xps44n7

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

5 1

Christina Heart is a Sound Therapy and Energy Medicine Practitioner and Reiki Master Teacher who has been involved in the Healing Arts for three decades. She was diagnosed with EGPA ten years ago and created a sound therapy program to assist her with her healing. In this webinar you will learn about sound therapy, sound therapy technologies, heart focused intention and heart centered breathing.

If you did not join us live and are listening to the recording, the link to listen to the Vasculitis Group Sound Therapy Session audio is: www.oneheartwellness.one/vfgroupsoundtherapy.html

he link to join Christina's Free Sound Therapy Program so you will be able to listen to ALL of the sound therapy audios anytime, at your convenience is www.oneheartwellness.one/try.html

When listening to the sound therapy recordings, it is recommended that you listen with a stereo headset or earbuds to receive the benefits of the sound therapy technologies.

Recorded March 2024

4 0

Living Well with Vasculitis: Quality of Life Panel with Dr. Nicole Orzechowski, Ronald Falk, Dr. Elizabeth Brant, and Dr. Eveline Wu.

The 2024 Chapel Hill Regional Conference.

5 0

Social worker, art therapist and Australian pioneer in the field of grief counseling and hospice/palliative care, Irene was diagnosed with Wegener’s Granulomatosis, now known as Granulomatosis with polyangiitis ( GPA) in 1998 at the age of 48. After three relapses over this period Irene is hale and hearty and attributes much of her wellbeing to creative arts activities and therapy. She completed a PhD in Expressive Arts Therapy at the European Graduate School in Switzerland in 2018 and published a book, An Arts Based Approach to Healing Loss and Grief: Working with Individuals and Communities Across the Spectrum of Loss in 2021 for Jessica Kingsley Publishers.

Irene shares some of her personal and professional experiences and introduces an art activity to promote self-awareness, resilience and well-being.

3 2

This video is private.

9 3

Learn how to share your story to raise vasculitis awareness. In this workshop, writer and storyteller Ashley Asti will give you a simple, no-fail guide to writing and sharing your story and will offer real-life examples to inspire you.
Vasculitis is a rare disease. So rare that, far too often, it gets misdiagnosed for months or even years. So rare that people impacted by it often feel isolated and alone on their journey. So rare that friends and family don’t always understand it. We need to bring light to this rare disease. Now more than ever, we need your voice.

5 0

Discover Your Resilience Profile https://www.vasculitisfoundation.org/wp-content/uploads/2024/05/Path-of-Resilience.pdf

Stephen Sideroff, Ph.D., a psychologist and internationally-recognized expert in resilience, helps you unlock your body's ability to restore balance with these nine keys to optimal functioning. Discover your personal resilience profile by taking a quick resilience quiz, allowing you to identify the growth mindset that can help you master stress. Learn how emotional intelligence can contribute to improved well-being and explore new techniques that will help you cope with illness and experience greater life satisfaction.

8 0

Join us for a floor-based or bed-based nurturing SomaYoga class designed specifically for individuals living with vasculitis. Led by experienced Yoga Therapist, Molly McManus who understands the unique challenges of managing fatigue and exhaustion, this class offers a gentle yet effective approach to restoring energy levels and promoting overall well-being.

SomaYoga combines gentle movement, simple breathwork, and relaxation techniques to help release tension, improve circulation, and cultivate a sense of inner calm. Through accessible low-load somatic movement sequences, participants will learn how to honor their bodies' needs and find balance amidst the demands of daily life.

Whether you're experiencing acute fatigue or managing chronic exhaustion, or just simply want to find more ease, this class provides a safe and supportive space to explore reconnecting to your body and mind. You'll leave feeling refreshed, replenished, and empowered to navigate today’s journey with vasculitis with greater ease and resilience.

No prior yoga experience is necessary. All levels of mobility are welcome. Come as you are and take the first step towards reclaiming your vitality.

Requirements: Floor space with a mat or a space in your bed if you are experiencing acute fatigue. A pillow or two, a blanket, and a small towel.

You can find more nurturing yoga classes on Molly's website https://www.yoganorthduluth.com/

5 0

Presentation Slides: https://www.vasculitisfoundation.org/wp-content/uploads/2024/06/Grief-Vasculitis.pdf

Living with vasculitis brings not just physical challenges but also deep emotional ones. Noelle Creamer, a Board-Certified Health and Wellness Coach who’s also living with vasculitis, dives into the grief that comes with a vasculitis diagnosis and how it affects more than just our health. She explores what this grief looks like, why it's so hard to talk about, and how we can move forward with hope.

What you will learn in this workshop:

Understanding Grief’s Many Forms: Gain a deeper insight into the various types of grief one may encounter with a vasculitis diagnosis, including loss of control, loss of trust in one's body, or loss of personal identity, purpose and direction.

Unveiling Disenfranchised Grief: Discover what disenfranchised grief is and why it's significant, especially when your feelings of loss go unrecognized by society.

Recognizing the Symptoms: Learn to identify the symptoms of disenfranchised grief and understand how they might differ from those of traditional mourning.

Physical Manifestations of Grief: Explore how grief can be embodied, learning to recognize the physical signs and symptoms that grief may be affecting your wellbeing.

Self-Reflection Prompts for Tough Days: Arm yourself with thoughtful questions to guide you through difficult moments, fostering introspection and self-compassion.

Cultivating Self-Care: Learn about practical self-care strategies for challenging days, designed to nurture both body and spirit.

Embracing Your 'MVP': Engage with key practices—Mindfulness, Visualization, and Purpose—as tools to center yourself and find peace amidst the turmoil.

Applying the 3-H's Approach: Determine which type of support you need at any given moment and learn how to communicate these needs to others.

Community and Support: Learn the importance of sharing your story and finding a community that understands and supports you.

About Noelle:

Noelle Creamer is a Board-Certified Health and Wellness Coach with training from Duke University, and the Co-Founder of BrightlyThrive™, a community-based app that supports those living with autoimmune conditions, inspired by Noelle's own victory over Granulomatosis with Polyangiitis. Noelle’s credentials also extend to certifications in breathwork, mind/body connection, lifestyle medicine, nutrition and yoga, enriching her holistic approach to wellness.

Her mission is clear: to empower people to transcend health challenges and live fully today without fearing tomorrow. Noelle specializes in cultivating a positive mindset and building healthy habits in nutrition, exercise, sleep, and community connection. She is a guide, mentor, and advocate for thriving health and wellness.

24 5

Links to resources mentioned in the presentation can be found at the end of the description. Chronic pain and illness can be lonely and isolating, particularly if you’re not in a relationship. It may be overwhelming to contemplate how to meet someone and form an intimate connection. If you are wondering if it’s possible to date while living with chronic health conditions like vasculitis and how to go about it, join Kira Lynne, a clinical counselor and someone who has lived with chronic pain and illness for many years, as she talks about the ins and outs and the up and downs of dating with what are oftentimes debilitating health conditions.

Personal Core Values Exercise: https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Personal-Core-Values-Exercise-.pdf
The Four Agreements: https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/The-Four-Agreements.pdf
Core Desired Feelings Exercise: https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Core-Desired-Feelings-Exercise.pdf

9 0

Links to helpful resources can be found at the end of the description.

Managing chronic pain and illness is difficult on the best of days, but when you find yourself facing these challenges within a relationship, it often makes things even harder. Not only are you having to manage your symptoms, but your partner is also having to learn and adjust as well. This can result in feelings of guilt, fear, resentment, and uncertainty for both parties. Kira Lynne, a clinical counselor and someone who has lived with chronic pain and illness for many years, shares information and skills to help you support your relationship in these difficult times.
• Needs Inventory https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Needs-Inventory.pdf
• Feedback Formula https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Feedback-Formula.pdf
• Feelings Inventory https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Feelings-Inventory.pdf
• Fighting Fairly Do's & Don'ts https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Fighting-Fairly-Dos-and-Donts-.pdf
• Listen, Summarize, Validate https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Listen-Summarize-Validate.pdf
• Additional Resources https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Additional-Resources.pdf

5 2

“How do I show up as a parent when I’m in a flare?” “How do I navigate sending my child to daycare when my immune system is compromised?” “How can I do my best not to miss out on important family events with my children?” In this discussion with Cassy Sims, MD, a rheumatologist at Duke Health; Heather Tam, a patient advocate and mother living with vasculitis; and Kayden Carter, a father living with vasculitis, we explore your most pressing questions about raising a young family when you have vasculitis.

12 2